So I went to the gyno for some problems I've been having and for one of them she decided to run some blood work to check my thyroid levels. Well my rheum usually runs them a few times a year because she has suspected from symptoms that there was something wrong with it in the past but nothing ever turned up abnormal. The gyno office called yesterday and told me my TSH was elevated and to call my rheum to see if she wanted to do more tests and all that. Normal range is like 0.5-4 and mine was 6 something. I've asked around a few other places but knew I would get some of the best info here so I have something useful when my rheum calls me back on Monday.

Derrie

08-11-2012, 11:35 PM

Hey Ritz--

A TSH that is elevated like that likely means you are hypothyroid-- that is, your thyroid is not producing enough thyroid hormone. TSH (thyroid stimulating hormone) is produced by the pituitary gland to get the thyroid to make its hormones, T3 and T4. When thyroid hormones get too low, TSH goes up, so a high TSH generally indicates hypothyroidism.

There are a few causes of hypothyroidism, but a common one, especially for people with AI disease, is Hashimoto's thyroiditis, which is autoimmune thyroid disease. To check for this, you rheumatologist should re-check your TSH, check your T3 and T4, and for anti-thyroid antibodies: Thyroid peroxidase antibody (TPOAb) and Thyroglobulin antibody (TgAb). If you have high levels of those antibodies, it means you have Hashimoto's.

I have Hashimoto's. For me, it has not been a big deal. I've had it for six or seven years now, and all I do is take a Synthroid pill every morning, and I'm fine. I do have to get my TSH and T4 checked every six months or so, because Hashimoto's can make your levels go up and down, and your dose of Synthroid has to be adjusted accordingly. My dose has been tweaked up and down a ton of times.

Once I started on Synthroid, my symptoms went away, and I'm doing fine on that front. Some people have a harder time than I did, but for most people, thyroid hormone replacement is all you need to deal with that.

Let me know if you have any other questions about thyroid problems. It's one thing I'm pretty familiar with!

jmail

08-12-2012, 07:13 AM

About the same here with me Ritz. My experience with Hashimoto's is very similar to Derrie's. The only differences being that I've had mine for over 10 years, and that I had to change doctors in order to find it. My old doctor used the TSH blood test only, and when you first start on Hashimoto's, as Derrie says, you'll go up and down with the TSH level. (My thyroid is almost "dead" now.) My doc at the time, never thought a 6 level was bad enough to warrant further investigation. "... it's just elevated a little bit, and that's fine..." I felt like a worn-out old man (still do, but I are one now). If he would have done the other blood tests, he would have found that my T3 & T4 levels were low. By the time I changed doctors, my levels were at dangerous levels. It took me about 3 years to find the correct levels, and we've had to increase my doses a few times over the years, in order to keep up with my failing thyroid gland. I take synthroid and cytomel each day WOF (With Out Fail), even when I had my adverse reaction to a drug, I still took my synthroid, and the first drug I'm taking since "recuperating", is the cytomel. It's important stuff. There are a few "natural" hormone replacements, such as Armour, that might be used instead of the synthetic stuff (hence the "syn" part of the "synthroid" name). The doc also tracks my vitamin D level, since it's very important for hormone absorbtion from the pills. It's no big deal to have it, but it is important to pay attention to symptoms (which are similar to your other symptoms), and to medicate properly with consistent doctor monitoring and consultation. The thyroid regulates just about everything in your body...

Derrie

08-12-2012, 07:49 AM

I'd like to echo jmail that taking vitamin D and calcium is important when you're on thyroid hormone replacement like Synthroid! Synthroid can interfere with calcium absorption and bone density, and keeping up on your D and calcium minimizes that.

If you don't get it regularly checked, I'd ask to have your Vitamin D level checked, too. When I first had mine checked, three years after I started Synthroid and after I randomly started seeing a new doctor because I'd moved, I was surprised to find my vitamin D level quite low! Now, I take vitamin D and calcium every day.

magistramarla

08-13-2012, 04:13 PM

Ritz,
I'm just catching up here. I'm glad that the gyno caught this. Perhaps now you can finally get some answers out of your rheumy.
Hugs,
Marla

ritzbit2

08-16-2012, 08:10 AM

Well I finally got a call back today from my rheums office and it was kind of stupid. "She says that from the results from your other doctor your TSH is mildly elevated. She wants you to ask if your primary is comfortable treating it or to have him recommend an endocrinologist." She didn't take any more blood work, check for thyroid antibodies or anything like I thought she would. She, yet again, pushed me off onto other doctors when I'm sure she could have prescribed something. Or why couldn't she have just recommended a doctor instead of making me call and bug my primary? That poor man is probably sick of me calling him about stuff that he says she definately could help me with, she just chooses not to.

Manderson

08-16-2012, 09:10 AM

You ARE probably better off with an endo keeping tabs on this. GPs can be a bit clueless about endocrinology. It's one of the hardest specialities.

I know it's a pain getting someone else involved for the referral but if you're in an HMO perhaps that's the only way?

Derrie

08-16-2012, 02:37 PM

Well I finally got a call back today from my rheums office and it was kind of stupid. "She says that from the results from your other doctor your TSH is mildly elevated. She wants you to ask if your primary is comfortable treating it or to have him recommend an endocrinologist." She didn't take any more blood work, check for thyroid antibodies or anything like I thought she would. She, yet again, pushed me off onto other doctors when I'm sure she could have prescribed something. Or why couldn't she have just recommended a doctor instead of making me call and bug my primary? That poor man is probably sick of me calling him about stuff that he says she definately could help me with, she just chooses not to.

Ritz, a few things--

First, your rheumatologist was right to refer you to another doctor for management of your hypothyroidism. That's not a rheumatologist's area of expertise. Managing hypothyroidism involves more than just prescribing thyroid hormone replacement-- a doctor has to check your thyroid levels regularly and adjust your medication accordingly. That is why she didn't just prescribe you something. Managing thyroid levels can be twitchy, and it's outside the box of what a rheumatologist does.

Second, your primary care doctor may actually be the best person to deal with this. Hypothyroidism is quite common, and unless you're a particularly difficult case, your primary care doctor is probably perfectly equipped to manage it. My Hashimoto's was diagnosed by a former primary care doctor (who ordered the thyroid antibodies and everything) and is managed exclusively by my current primary care doctor. I have never seen an endocrinologist for it, and unless you and your primary can't get your levels stable, it's probably not worth the trouble of dragging a new, unfamiliar doctor into the picture. So, I would suggest giving it a go with your primary care doctor. When you see him, ask him to check your thyroid antibodies. There is no reason why he shouldn't.

Finally, do not feel bad about "bugging" your primary care doctor-- that is what they're for! Our primary doctors are our first line of defense when something new comes up unless it's very clearly related to what we see the rheumatologist for. Newfound hypothyroidism is exactly the kind of issue a primary care doctor should evaluate first. Then the two of you can decide together how to go forward with treatment or whether to refer you to another specialist.

Keep us posted!

ritzbit2

08-17-2012, 02:13 PM

I'm kind of out of it right now so sorry if this doesnt make sense. Called doc and left message and he is supposed to call me back on Monday because he isn't in the office. I have been stressed for the past two days wishing I had decided to take the year off because I might not be able to afford my fall classes. Trying to find some help. and a bit off topic but have any of you ever had a really high pulse rate and pretty low blood pressure? Should I be worried about it? With all this stress and craziness I've been feeling terrible, so I used my home monitor to take my blood pressure to see it I had made it go up like crazy. My normal bp is between 120/80 - 132/85 and my resting pulse is usually 120-130(maybe little higher). When I just took it my BP was 98/65 and my HR was 157. Doesn't blood pressure usually go UP when stressed....? I've also never had my bp go under my norm.

I feel like epic crap.

magistramarla

08-17-2012, 02:54 PM

Ritz,
I can't answer any of your questions, but I just wanted to send you a great big cyber HUG.
I know it's difficult, but try to de-stress. Getting a college education has become very difficult in this country lately.
All I can tell you is to hang in there and keep trying.
LOTS of HUGS,
Marla

ritzbit2

08-17-2012, 07:11 PM

Anyone familiar with Addisons Disease? My mom found it while trying to help me figure out if I should be going to see a doctor. I fell over earlier after seeing spots. My bp has been around 94/64 for awhile now. Thoughts? I read too much on the internet so I made myself stop.

Derrie

08-17-2012, 07:37 PM

Anyone familiar with Addisons Disease? My mom found it while trying to help me figure out if I should be going to see a doctor. I fell over earlier after seeing spots. My bp has been around 94/64 for awhile now. Thoughts? I read too much on the internet so I made myself stop.

Ritz-- Addison's is an AI disease that affects your adrenal glands. But yes-- stop! No more Doctor Google! There is obviously something going on, and when a new crop of symptoms pops up like this, it's definitely time to make an appointment with your internist/primary care doctor. He will be able to assess your constellation of symptoms, perform preliminary tests, and refer you to the proper specialist if necessary. I know you worry that you bug him too much, but I would say that you have enough going on that now is definitely the time to make an appointment.

Also, re the blood pressure, I wouldn't stress too much about that right now. That's still within normal range, even though it is on the low side for you. Actually, that is about my normal blood pressure (I tend to run on the low end). But since you're having some hypotensive symptoms, and it's low for you, that's another factor weighing in favor of you making an appointment first thing Monday.

(To be honest, I read too much on the internet, too. I think it comes with the territory.)

Manderson

08-18-2012, 07:51 AM

Yes step away from the Google, but I am guilty of it as well. Addison's was what popped into my head when I read your bp stats. I approached my PCP about Addison's two weeks ago; she was not willing to test out since I had one symptom (darker patch of skin). Jokingly I told her that if I died from an Addisonian Crisis it was on her head. But seriously, the internet is both a blessing and curse esp in healthcare. Yes, we're happy that patients are more pro-active when it comes to their health; OTOH they do come in with the most "out there" diseases because they googled and are convinced they have some rare condition that needs to be reported to the CDC.

Still any new symptom(s) needs to be reported and don't worry about bugging the doc - that's what he's paid for.

jmail

08-19-2012, 09:12 AM

... that from the results from your other doctor your TSH is mildly elevated...

That's what I heard a lot of. As Manderson and Derrie have mentioned, don't fret the Addison's. Just the thyroid getting out of whack can do all sorts of "odd" symptoms like you're experiencing. The thyroid regulates all sorts of stuff, including blood pressure and blood sugars. Just using a TSH test is not sufficient to use for a diagnosis. The "best" way is a basal body temperature test, though most docs (not forgetting the patients) don't wanna go through that, and the TSH, T3 & T4 tests are usually good enough to follow "progress" with, after the initial "full battery" of tests for diagnosis, which would include lipids and minerals, among other tests that I can't remember the names of anymore... (bad "fogbank" again today)

wendya432

08-19-2012, 01:32 PM

You know, I just went to the Endo and with just a low T4 and my symptoms he put me on synthroid and is running labs for Hashimoto's. He didn't even need any prodding from me. Just listened to my symptoms and did a brief exam and knew what to do. I'm so glad I was able to get into the Endo.

ritzbit2

08-20-2012, 01:31 PM

My doc is reordering the tests because he found out they only ran the TSH and said he needs a free T4 test along with it to know if I need medicine or not. I also went to my pulmonologist today for my yearly appointment and she is sending me to get tests done with cardiology to see if they can FINALLY find out why I still get so short of breath and have a high heart rate. They're basically doing a stress test, and maybe a Holter moniter test. If they find nothing there they're going to do a similar test only monitoring my breathing to see if I have asthma, which I think could be a possibility. Two of my brothers have asthma. Hopefuly I can get in my tests soon to figure it out so I don't have to keep worrying about it every now and again when it starts acting up really bad. Now off to get the blood work done! lol

glad you are getting progress.
sometimes the road is very long.
but atleast you are walking in the right direction, this time.

magistramarla

08-22-2012, 04:56 PM

Ritz,
Finally, some progress. They seem to finally be listening to you!
I know that you are in classes from FB. I'm glad that worked out and you seem to have some good and interesting classes.
Keep going forward!
Hugs,
Marla

ritzbit2

08-28-2012, 08:17 PM

Sorry I didn't get back to you guys lol I have been a little wrapped up with school starting and what not. My doc said the tests came back a little bit off but not enough that it would make him think anything is wrong. My antibodies were higher than the last time they every checked them, but they are still within normal range so he said he just wants to check it all again in 3 months to see how it looks then. Other than being completely drained from a weird sleep schedule and a few other small odd ball problems I am feeling pretty good now :) maybe the issues were some weird thing? I'm sure those things can get out of wack for a few days and get back to normal. Im not sure, I dont really know much about the thyroid yet lol

jmail

08-30-2012, 02:21 PM

Hashimoto's will "come & go" with symptoms, and a person with other autoimmune issues has a much higher chance of having Hashimoto's. Checking again in 3 months is a good idea. Be sure they do at least the T3 & T4 along with the TSH again...

ritzbit2

09-06-2012, 02:59 PM

Figured I would just post here instead of making a whole new post. I haven't exactly been feeling the best lately. I almost passed out swimming today. My heart rate went up through the roof and I got all dizzy. Its very frustrating.

jolynnhughes

09-06-2012, 05:10 PM

Ritz,

I have Hashimoto's disease, and unlike Derry, mine is awful. I have bad joint pain, extreme exhaustion, tinnitus, peripheral neuropathy, eye inflammation, etc. and at it's worst, seizures. No one can say for sure the seizures are cause by Hashi's, but I couldn't work until it was diagnosed; I was having multiple seizures a week (I'm a teacher, so that was a problem). I have only had two seizures since I started taking Synthroid in February. The proof is in the pudding, as they say.

My advice: find a doctor who treats Hashi's based on symptoms and not on bloodwork. With Hashi's, your TSH, T3 and T4 will fluctuate. At first, I went to an endo who didn't believe in treating the disease/symptoms until my TSH was off. There are two schools on the topic. I had to find one who would treat it regardless. The latest research supports early diagnosis and treatment. You need to also make sure you find a doc who knows the latest research on healthy levels. There are two schools of thought there. I believe the new thinking bottom range is .1 or .3 (can't remember right now). The bottom line -- normal is when you feel well, not when a number shows it. I know when I'm low because I freeze to death, can't stay awake no matter how much sleep, and I have neurological problems. When I'm high, I get jittery and have heart palpatations. I have a variety of dosages on hand, and my doctor adjusts accordingly. We check blood levels about every three months unless I have a seizure.

You just have to call around, ask questions, and doctor shop. I made three calls, and I just asked the nurse point blank, "Does your doctor treat Hashimoto's despite TSH levels?" I found mine on the third call. I got lucky. Her husband suffers with Hashi's, so she stays current on the research. She's looking into low-dose naltrexone therapy now. She wants to do a lot more research, but she claims there is a lot of buzz about it for Hashi's. I'm hopeful.

My rheumy won't treat my Hashimoto's even though it's an autoimmune disease. She will only provide a prescription for Lodine for joint pain and Neurontin for the peripheral neuropathy. Doctor's just aren't treating the disease like an autoimmune disease, YET! For some reason, they don't think of it as a life-altering disease. My rheumatologist told me that while it caused the same symptoms, the commonly prescribed autoimmune drugs like Plaq, etc. were just not worth the side effects and long term risks when weighed against the effects of the disease. Translated: "You're fine. Quite being such a wuss." And he had the nerve to tell me that Hashi's doesn't affect any of the major organs -- it's just a problem for joints. OMG! I know they all have their own specialties, but really. Long story short, I'm still not sure about a full diagnosis (if that's possible with autoimmune), but I do know I have Hashi's, and it has changed my life. My new normal is a constant state of medium level of discomfort and functionally exhausted. I won't discuss the other end of the spectrum for fear of the jinx.

Good luck, and keep me posted. I'm in and out these days -- a new school and new as an assistant principal -- too busy!